I refuse to give up.

I cannot begin to describe the emotional pain I feel each and every day because of this illness.

I had a life that I loved. It wasn’t perfect, but it was great, and it was one that I was building. I had the ability to chase dreams, change the world, express myself, show love to those around me. I had (still have) an amazing wife and daughter, we had just bought a home of our own, that we could mold and customize into our dream home. I had the skills and abilities to do that work. We had just moved to this town that is interesting and full of possibility. We were excited to make new connections, build new community, become part of something bigger. I had a job that I loved, that made an impact on the world, was challenging, allowed me to be creative, and most importantly allowed me to build community and help change the world. I had found a passion in woodworking and was really starting to hit my stride where my skill level was finally starting to line up with my creativity. I had 3 or 4 amazing ideas in my head ready to start once our new house was setup. And I had this passion for the world where I loved to learn new things, meat new people, and grow as a human being each and every day.

But, around 3 years ago that was all snatched away from me. What started out as just feeling under the weather a lot, progressed into it was becoming more challenging to do things, and eventually around 3 years ago turned into it was hard to get out of bed. And since then it’s been a steady decline into the hellscape that is my existence now.

I’ve talked plenty before about what’s happening but just know that the other day I had to prepare some information for a doctors appointment (more on that in a minute) with a new doctor, and I have 58 different symptoms (spread across 5 different illnesses/conditions). 58! And every day anywhere from 10 to all of them flare up for some reason or another. There are no good days.

So my life has been taken away, I’m barely able to function at the lowest level of day to day ability, any lower and I will need ongoing medical support, and I can’t find a doctor who gives a shit for the life of me. I had an appointment with a new internist on Friday. We were full of hope that he was going to be able to help find some solutions to make things better. I’m not talking about getting my old life back better, I’m talking about being able to watch a movie with my wife and daughter without crashing (a term that refers to when we exceed our energy envelope and we get really sick with flu like symptoms and then normally the next day you feel like you’ve been hit by a bus), or be able to have a conversation for more than 10 minutes with someone without crashing. Or to be able to laugh at something funny without breaking out into a full body sweat. I’m not shooting for the stars here, just looking for a bit of relief. Just looking to stop the slide into the darkness that is severe ME/CFS, something no one should ever have to experience.

And it was a complete waste of time. I crashed hard after the appointment, it was about an hour long and I’ve been in incredible pain ever since. Barely able to focus on anything. I’m surprised I’m even able to write this as I earlier today I could barely watch YouTube.

I like to consider myself a fairly intelligent person (I know I sound like a jerk saying that). But something I’m not good at is medical science. I find it really hard to understand and figure out. I am not a doctor. But, I know for sure, that I knew more about my illnesses than the doctor I saw on Friday. He knew what POTS was and how to treat it. He had heard of MCAS and knew that you treated it with some sort of antihistamines, but that’s where his knowledge of it ended. And he barely knew what ME/CFS was, he called it MBCVS or something at one point and argued with me that exercise is the preferred method of treating it (which is 10 year old information at best). Something that has been proven recently to be extremely detrimental to people with ME/CFS especially those of us that experience PEM (a crash).

And he just shewed us out of there like there wasn’t really anything wrong with me.

It’d be one thing if the illness you had just didn’t have a cure, but you got some compassion or understanding from the doctors. But to just be dismissed as if there’s nothing to worry about because your illness doesn’t register within their system of tests, is beyond infuriating.

Our medical system is broken and it’s failing sooooooooo many fucking people. There are over 600,000 people who have ME/CFS in Canada, and it’s actually probably a lot higher as there is no test for it, and so many people go undiagnosed or misdiagnosed (FYI people with Long Covid have ME/CFS. Not all people with ME/CFS got it from COVID, but the two are connected). It is by far the most underfunded illness out there at the moment. It’s heartbreaking to see all the people in the support groups, it’s multiple times a day people being gaslit by their doctors, “are you sure you’re not just anxious?”, “have you tried going for a walk”.

There is one ME/CFS clinic in Ontario. The main doctor there left a few years ago to go to Florida to be a doctor there. And if you were recently diagnosed and wanted to get an appointment there the waitlist is currently 4 YEARS LONG!!!! 4! There are two POTS specialists in Ontario, neither are accepting new patients because their waitlists are over 2 years long so they cut it off. There is one MCAS specialist and calling him a specialist is generous. He doesn’t even understand the illness, and I’ve yet to meet someone in the MCAS Facebook group who he has helped in a substantial way to reduce their symptoms.

None of these illnesses have drug treatment options that were specifically designed for them. They are all just drugs that doctors were like “Maybe this heart medication would help”. POTS is really the only one with any actual treatment options. MCAS is just try all the allergy meds and see if one of those will help you. And if you can find a doctor who will let you try one of the very very very few options available for ME/CFS then you are extremely lucky. Right now my official treatment recommendations from my doctor (for ME/CFS) are…nothing, not a single thing, no ideas, none.

If I did have a doctor who was knowledgeable in this area (which there’s maybe 2–3 in all of Ontario) there are maybe 2 or 3 drug options that have a less than 50% chance each of working. And they won’t cure things, they will maybe reduce symptoms. But they also make symptoms worse in some people. It’s a roll of the dice.

I can’t express enough how shitty this all feels. To have your life ripped apart, everything taken away from you. You have to sit back and just watch the world continue on without you. You have to watch your daughter growing up so fast and you’re missing it, missing all the good stuff. She’s the best and you know she loves you, and you know that she knows that you love her. But it’s not the same as being there.

But that being said, after everything I’ve just said. Fuck it! I am not giving up. Not now. Not ever. This is a problem that can be solved. Just like opening an art centre was. Just like running a newspaper was. Just like starting a giant multimedia art light and technology festival was. It’s a problem that needs to be solved. I need a few days to rest and recover from the aftermath of Friday’s appointment.

But we will figure this out. There’s a doctor in New York who is the worlds leading expert in MCAS, and he has done with with people that have one of my other conditions (polycythemia) as well. It would cost $6–10k to go see him, and I’m not sure how I’d be able to handle a three day trip to NY. But it’s an option that we’ll have to at least consider in the future.

To paraphrase Bishop Desmond Tutu, there’s only one way to eat an elephant: one bite at a time.